This coming April holds a big anniversary for me: it will be 20 years since I was diagnosed with celiac disease. Twenty years! If my diagnosis were a person, it would be old enough to vote, get married, or serve in the military. But I still remember very clearly how rough the transition was. Back in April 2004, I truly believed my career as a travel writer was over. I also thought I'd never be able to eat at a restaurant again. I was wrong on both fronts, but it took me a while to learn that, because I didn’t even know anyone else with celiac disease. I wanted to share some of the things I wish I had known when I was first diagnosed.
Discovering gluten intolerance is a blessing, not a curse. For years before my diagnosis, I was plagued with medical problems that ran the gamut from migraines to joint pain. Post-diagnosis, my first thoughts were all about what I was losing, like the freedom to eat whatever I wanted. In reality, I was gaining a tremendous amount: freedom from the pain and suffering I'd gone through for years. Freedom from prescription medications that I didn't actually need. Freedom to eat and not be harmed by food. It took me a while to see that the diagnosis gave me more control over my life and my health, but that's what it did.
The Internet is your best friend and your worst enemy. It's connected me with gluten-free people and groups around the world and it’s provided me with useful information. But it's also tried to feed me some misinformation along the way. There are some confused people online who write things like “Vinegar contains gluten!” (Not true, except for malt vinegar.) Some will tell you that you can't eat maltodextrin. (Wrong: it’s usually made from corn in North America, and the National Celiac Association says it’s safe to eat even when it’s derived from wheat. The fact maltodextrin starts with "malt" doesn't mean it has gluten.) There is no such thing as “growing out” of celiac disease—it doesn’t go away, no matter what people on Tiktok say.
The world is your oyster. In the years since my diagnosis, I’ve traveled all over the globe. Celiac disease has not kept me from visiting Easter Island, South America, the Caribbean, Europe, Asia, or the Middle East. It won’t stop you, either. It means there’s more research to do before a trip, more legwork on the ground, and some experiences you can’t have (I’m still hoping for a gluten-free Pastéis de Belém one day), but a world of adventures awaits you!
People will try to sell you stuff you don’t need. After I was diagnosed, I started stressing about products like toothpaste, lip balm, and lipstick—anything that went into or around my mouth. I discovered a very expensive toothpaste that was gluten-free, but before I bought it, I thought, Maybe I should call Colgate? It turned out Colgate (and Crest and Aquafresh and Sensodyne) toothpastes were gluten-free, even though the label didn’t say so at the time (they do today). What amazed me was that there were companies selling gluten-free shampoo. For kiddos? Okay, I get it, kids eat anything. But for everyone else? NO.
The devil is in the sauces: It's easy to spot—and avoid—things like pasta and pastries made with wheat. But gluten sneaks into all kinds of foods, such as soy sauce. A couple of weeks after my diagnosis, an editor took me out to lunch, suggesting a Japanese restaurant. That seemed safe to me, since I knew I could eat fish and rice. It never even occurred to me that soy sauce might be a problem until I got sick right after that meal. From that experience, I learned to question everything.
Cross-contamination is also the devil: Some restaurants will have a product that's free of ingredients with gluten—such as french fries—but that product is boiled in the same vat of oil as their beer-battered fish. It can be a disappointing moment when you realize that cross-contamination issues have limited your five choices on the menu to one. Restaurants are becoming increasingly aware of this issue, but there’s still so much work to do.
Join a gluten-free community: This is valuable to have in person and online. You need people to talk to, get advice from, and (sometimes) to vent to. The Gluten-Free Guidebook has its own Facebook group, and there are so many great gluten-free newsletters here on Substack. Don’t forget Meetup—they host gluten-free events in many cities.
Your family should get tested for celiac disease. Celiac is a genetic autoimmune disease, so if you have it, there are reasonable odds that another of your blood relatives does as well. I am aware that some people will refuse to get tested (I have family that falls into this category, the struggle is real), but others will and the diagnosis will improve their quality of life (I have family in this category, too). The important thing is that you share your diagnosis with extended family.
Be assertive: At another early post-diagnosis restaurant meal at an over-priced and over-rated NYC restaurant, a server told me he couldn't “bother” the chef with my questions. I felt embarrassed, but fortunately, I was with a very assertive public-relations exec and she reamed him out in the middle of the restaurant. It was an important lesson: never feel bad about speaking up for your medical needs.
There are cheat sheets: Reading most ingredient labels is a confusing exercise early on. Is ethyl maltol safe? (Yes.) What about carrageenan? (Yes.) And couscous? (No. Some people mistake it for a type of rice, but it's actually a gluten-containing grain.) Here's a list of safe ingredients for gluten-intolerant people. Here's a list of unsafe ingredients. Pass these easy-to-consult lists on to concerned family and friends who ask for information.
Tip extra for good service: If you've had to ask your server 101 questions, and your server has done a great job of answering them, make sure they're properly rewarded. The next gluten-free patron will thank you.
It gets easier, honest: Over time, the label-reading, product-hunting, and restaurant-questioning becomes second nature. People are usually incredibly helpful when they find out you're avoiding gluten for a medical reason, and not because you're on a fad diet.
Friends, I’d love to hear what you wish you’d known when you were diagnosed!
Happy 20th celiac anniversary!
This is a great post. Great writing too!
Thanks for telling me that it doesn’t have to stop me from travelling!
This post is totally spot-on, and happy 20th celiac anniversary! It will be four years for me in March, and one of the other big things I wish I had been more prepared for was the financial burden of living with celiac disease. Not only is gluten-free packaged food more expensive, but restaurants often charge extra to make pizza, sandwiches, etc. gluten-free - plus there's the cost of regular doctor's appointments, celiac bloodwork, and follow-up endoscopies when needed. So having to budget for things accordingly has been key!